In March 2013, the Cystic Fibrosis Foundation updated its Infection Prevention and Control Policy for all Foundation events, meetings and offices. We took this step based on increasing medical evidence of a greater risk of people with CF spreading destructive germs to others with CF that may lead to severe or worsening lung disease. The new policy reflects the advice of leading medical experts and published medical research.
What is the Foundation’s Infection Prevention and Control Policy?
The key elements of the Foundation’s policy are:
- At any CF Foundation-sponsored indoor event or meeting, including gatherings such as Foundation chapter committee meetings, only one person with CF may be present. This person will be designated by the Foundation in close consultation with event chairs and key event volunteers.
- At Foundation-sponsored outdoor events or gatherings, people with CF need to maintain a distance of at least 6 feet from each other.
- Under no circumstances shall individuals who have ever had a confirmed positive sputum culture for Burkholderia cepacia (B. cepacia) complex attend any Foundation events, meetings or offices.
For more information, please read the Foundation’s full Infection Prevention and Control Policy.
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Why did the Foundation change its infection prevention and control policy?
For a long time, the CF Foundation has had infection prevention and control guidelines in place to promote the safety of people with CF. We updated our policy based on increasing medical evidence of the risk of people with CF spreading germs to others with CF that may lead to severe or worsening lung disease.
The Foundation’s new infection prevention and control policy reflects the advice of leading medical experts and published medical research (such as the Journal of the American Medical Association and Pubmed.gov). By updating our policy, we are reducing the risk of cross-infection among people with CF.
The health and well-being of people with CF is our topmost concern — it is at the heart of all we do.
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Did something happen at a Foundation-sponsored event that prompted the new policy?
Thankfully, there has been no negative incident or event that prompted this policy update. However, there is growing medical research showing a greater risk of people with CF spreading destructive germs to others with CF than was previously known. These germs may lead to severe or worsening lung disease and, potentially, death in some people with CF.
The CF Foundation is working with researchers to learn more about how widespread cross-infection is between people with CF and identify new ways to prevent and treat lung infections in those with the disease.
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For people with CF, why are indoor events or meetings different from outdoor events?
People with CF can get germs from others with CF either through:
- Direct contact, such as shaking hands or hugging
- Indirect contact, from touching common objects that have germs, such as doorknobs
- Infectious droplets that hang in the air after someone coughs or laughs
Medical evidence shows that people with CF can get CF germs from others with the disease. This usually takes place in social settings, such as eating together, at educational programs/events and in exercise facilities.
At indoor events or meetings, there is a greater risk of spreading germs because people are closer together. This makes it more likely for people to encounter infectious droplets after someone coughs and when they touch common objects, such as doorknobs and pens that have been touched by others.
At outdoor events, there is still a risk of spreading germs; however, there is typically more space outdoors, and it is easier to move away from others. People with CF should keep at least 6 feet away from others with CF and visibly wear the CF Foundation logo pin or other designated identification at any Foundation-sponsored event. People with CF should not travel in the same vehicle or gather in common areas at these events, for example, in a tent or at an indoor happy hour that follows an outdoor event.
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Why can only one person with CF attend an indoor event or meeting?
Based on medical research, the CF Foundation has learned that the risks of a person with CF getting germs from another person with CF and the potential impact on the health of those with CF are greater at indoor events than at outdoor events.
As we learn more about these risks, we are taking stronger precautions to reduce the risk of germs spreading among people with CF at our events, meetings and offices.
The policy affects the participation of individuals with CF at Foundation fundraisers, planning meetings, advocacy gatherings and other settings, as well as volunteers with CF at Foundation chapters.
Other organizations, such as Cystic Fibrosis Canada and the Cystic Fibrosis Trust in the United Kingdom, have a similar policy to reduce the risk of cross-infection.
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If I or my child did not have any CF-specific germs in the last sputum culture, can I or my child still attend an indoor event along with others with CF?
Medical evidence shows that all people with CF could have germs that might spread to others with CF. Sputum cultures may not find all the germs that could spread among those with the disease. The Foundation is working hard to keep people with CF healthy and reduce the risk of cross-infection. For this reason, only one person with CF may be present at a CF Foundation-sponsored indoor event, meeting or office.
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How does the Foundation decide which individual with CF can come to an indoor event or meeting?
Every event is different. The specific event might dictate which person with CF the Foundation will invite. For example: Is a person with CF a speaker at the event, or is a person with CF receiving an award?
For each event or meeting, the decision on who will be the Foundation-invited guest is made by the chapter in consultation with the volunteer leader or chair.
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How can I or my child with CF continue to participate in CF Foundation indoor events and meetings?
The Foundation recognizes that among the many burdens of CF is that of social isolation. We are exploring new ways to help make it possible for people with CF to participate in indoor Foundation events and meetings. We are expanding our use of teleconferencing and live videocasts. There are also behind-the-scenes opportunities to participate, such as phone banking from home, online fundraising and meeting with corporate sponsors.
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If I have CF and attend a Foundation event, will I be asked to identify myself by wearing a pin?
- At indoor events and meetings: No, you will not be asked to wear a pin or other designated identification because only one person with CF will be present.
- At outdoor events: Yes, people with CF will be asked to voluntarily identify themselves by visibly wearing the CF Foundation logo pin or other designated identification for the event.
The logo pin or other identification is to help people with CF keep at least 6 feet apart from others with CF to reduce the risk of spreading or getting germs.
Contact your chapter if you have any questions about identification for any event.
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Is the Foundation’s policy discriminatory to people with CF?
The CF Foundation’s Infection Prevention and Control Policy was created in the best interest of the overall health of people living with CF.
Since the Foundation was founded in 1955, the science of CF has made great advances. Our understanding of and treatments for CF have come a long way. Through the Foundation’s efforts, the life expectancy of a person with CF has doubled in the last 30 years, and the quality of life for people with the disease has steadily improved. Nearly half of all people with CF are adults and many of them have full-time careers and families.
However, CF germs and severe lung disease still pose persistent problems for those with the disease and threaten to undermine the improvements in CF care that so many have worked hard to achieve. We must take strong steps to reduce the risk of spreading CF germs among all people living with the disease as we continue to search for a cure.
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What can I do to reduce the risk of getting or spreading germs?
To reduce the risk of spreading germs in all settings, it is important for everyone to:
- Clean your hands using soap and water or alcohol-based hand gel that contains at least 60% alcohol and has not reached its expiration date.
- Use a tissue when coughing or sneezing, throw it away and then clean your hands.
- If you feel ill, please stay away from others.
- Get the influenza vaccine every fall.
All people with CF should avoid the following activities because of the risk of spreading CF germs to others with CF. These activities include, but are not limited to:
- Shaking hands, hugging or physical contact between people with CF
- Kissing or intimate contact between people with CF
- Sharing personal items, drinking cups, utensils or respiratory equipment with others with CF
- Riding in the same vehicle or sharing a hotel room with others with CF
- Fitness/exercise class at the same time as others with CF
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Is there a risk for a person who does not have CF of getting CF germs or spreading germs to a person with CF?
There is no risk of CF germs being spread to an otherwise healthy person who does not have CF. However, viruses like the cold or influenza can be easily spread between everyone. These respiratory germs can make a person with CF sicker than other people. For that reason, the basics of infection prevention and control, such as cleaning your hands, covering your cough and getting the influenza vaccine, are critical.
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Are any CF germs worse than others?
We are learning that some germs may make some people with CF sicker. Any lung infection — including those caused by Pseudomonas aeruginosa (Pseudomonas), Burkholderia cepacia complex (B. cepacia) or methicillin-resistant Staphylococcus aureus (MRSA) — may lead to severe or worsening lung disease and damage. That is why, for people with CF, reducing the risk of getting germs is important for lung health and life.
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What if more than one person with CF comes to an indoor Foundation event?
Despite the Foundation’s Infection Prevention and Control Policy, individuals with CF might choose to attend indoor events or meetings without informing the CF Foundation or without the Foundation’s knowledge. If so, they do so at their own risk. The Foundation accepts no responsibility for any risk to the health of people who attend a Foundation event.
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Does the Foundation’s policy apply to a person with CF who has had a lung transplant?
Yes, this policy also applies to a person with CF who has had a lung transplant. This is because the upper respiratory system (sinuses) may still have CF-specific germs that might be spread to others with CF.
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Can siblings who have CF and are living in the same household attend an indoor event together?
Yes, people with CF who are CURRENTLY living in the same household, such as brothers and sisters, can attend indoor events and meetings together. If the family members do not live in the same household, they are not to attend the same indoor event or meeting.
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Learn more about CF Infection Prevention and Control:
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Updated 3/14/2013
